Cheers Dai,
Been to the Hospital today for blood tests and told the nurse about the fatigue and now extreme diarrhoea and abdominal pain which is keeping me awake. Was told if I have any other bouts then I have to take a sample to the Hospital on Thursday when I go for my Zometa injection. Bloods haven't changed very much apart from PP's which have gone from 22.40-29.66 in the space of a month. This reading was before the start of Revlimid so it will be interesting to see the next reading taken after the start of treatment.
Keith.
Hi Andy,
I'm with Dai on this one, it's most important you get all the information you can so you have it clear in your mind and can be part of the decision making process. This is paramount when things aren't quite going to plan.
You want to be leaving the Hospital confident that everything is being done that should be done.
Best wishes….Keith.
Thank's Dai,
What dosage of Rev/Dex are you on? I have started at Rev 25g/40g Dex 4 days on/off.
Will taking the Rev at night really make a difference to the fatigue issue?
I am also suffering from abdominal cramps although my bowel movement is ok.
As for sweating well yeah I get a bit of that too. If only this blooming weather would improve,can't remember the last time I saw some blue in the sky,oh yes I can when we flew to Jersey 2 weeks ago LOL.
Good health to all.
Keith.
Thank's Andy and Jen for your replies,apart from the one incident Sunday morning I've not since had the passing out feeling but I get a constant feeling of wanting to pass water through the night which interrupts my sleep.
I take Rev early morning so maybe the idea of late at night might be the answer to my sleeping problem.
These drugs are scrambling my mind and I can't think straight. I'm in a permanent state of confusion with no power to reason,what's going on here? Go for bloods Tuesday Zometa Wednesday then see Doc Thursday. It will be interesting to see if the PP's are falling.
Take care all…Keith.
Thank's Vicki/Tom
Didn't quite hit the deck Tom but it was a close run thing. If I hadn't got back on the bed I'd have been out cold.
I have also developed a pain in my lower back which seems to come and go.
I've met Phil a couple of times and wondered how he was doing,I think he relapsed around the same time as me first time around. This tiredness thing is the worst ever but according to the Nurse it's something I just have to live with.
Keith.
Hi Andy,
Sorry to hear about the rise in your PP's but pleased you had a good break in the Lakes.
I started the Rev/Dex on Tues and feel absolutely wasted. The whole of my body feels numb but at least the lump on my head seems to be disappearing. I'm back at the Hospital for bloods and Zometa on Thursday when the PP's will be monitored. Mine shot up from 5 to 10 and then 22 in the space of 2 months and the BMB showed 35% MM activity in the Marrow which triggered the need to start up the treatment.
Take care Andy and I hope the docs get to the bottom of things for you soon.
Keith.
Dear Siobhan I'm so so sorry to hear of your sad news. I didn't know your mum personally but through her many reply posts to me I certainly felt I knew her very well. She was invariably one of the first to reply to my posts with very kind and positive words and I'll miss her dearly as I know everyone else will who are regulars on this forum.
I did wonder what had happened when her posts stopped and unfortunately have only just seen your post today.
I just don't know what else I can say other than my feelings go out to you and all of your family.
God Bless….Love Keith.
Hi David,
that's great news…0.04 rise PP's is nothing to worry about as small fluctuations are irrelevent in the great scheme of things and as long as the doc is happy then that's all that matters.
Keep living for the day and don't neglect that water intake just to achieve that magic zero you still aspire to LOL.
Best wishes with continuous good health.
Keith.
Hi Tom/Elaine,
Great positive news for you both and I'm sure you'll make the most of it.
Drugs free and fewer Hospital visits is fantastic news and something we all aspire to.
I'm back on the old treadmill again but I still won't let it get me down,just have to make the best of things.
Take care.
Keith.
Hi Deborah,
I had 8 cycles of Velcade leading up to my 2nd SCT last August. I have to say I had very few side effects apart from fatigue during the first two cycles and spasms in my right hand when the Velcade dosage was slightly reduced after four cycles which seemed to do the trick. The downside was the remission only lasted 8 months but although disappointing was not unexpected.
Best wishes and good future health.
Keith.
Hi Eve/Slim,
My platelets and Neuts were also very sluggish and slow to rise. I had both Blood and Platelet transfusions after being re-admitted into Hospital with Neutropenic Sepsis and then contacted e-coli which was quickly sorted out.
My platelets eventually topped the 100 mark but only just and nowhere near the heady heights of 130 first SCT.
Sounds as though Slim is having a harder time of it but I'm sure he'll get there. As for the Hickman line as long as it isn't infected they will most likely keep it in while they need easy access to Slim's Blood Lines. Leading up to my first Transplant I had mine for 6 mths before it became infected and had to be removed.
Take care both of you and I do hope things pick up fast and you manage that Holiday you both deserve one.
Keith.
Hi Judd,
Only just seen your post and can certainly understand your feelings. I myself was misdiagnosed for over 18mths by my GP who said it was all in my mind and there was nothing at all wrong but I knew otherwise. I saw a chiropractor and had massage and manipulation because my lower back pain was so bad I was unable to walk more than 10 metres before having to rest. Then my Collarbone fractured and a week later my upper spine collapsed while I was eating a piece of toast. I managed to struggle into bed and as luck would happen my wife phoned me from work and I said phone an ambulance asap as I couldn't move. The Paramedics came out within 6 mins but without the right equipment. They had the morphine but not the right syringes to administer it and the gas/air bottle hadn't been refilled. The pain as you well know was absolutely unbearable but they did manage to get me to Hospital which is only 2 miles away which was just as well. I won't go too long into it now Judd but my official diagnosis was in Nov 2007 and now after 2 SCT's and 2 relapses I have just started my third treatment REV/DEX only this week which will be ongoing for as long as it works.
Hang on in there Judd and keep us all informed.
We all do care on here because we all relate to each other and so can empathise and share experiences from a position of knowledge which is the only way anyone can really understand this horrible disease.
Stay positive and keep well.
Keith.
Hello Mari,
I also give best wishes to you both and hope all goes plain sailing for the 2nd SCT.
I felt more prepared 2nd time around due to my prior experience but due to an e-coli infection the ordeal didn't feel any easier and I only hope you get more than the paltry 8 months remission I got from it.
When I had my harvest they managed to get enough cells for 2 transplants so I didn't need to go back in for preparation which made things a little easier due to the fact that the Hospital is 43 miles from where I live.
I got 2yrs 4 mths from my first SCT which I thought was pretty good (zero PP's and no drugs) but the second was never quite as good unfortunately but I have heard of some patients getting even longer remissions the 2nd time and I do hope Steve is one of the luckier ones.
Best of health to you both.
Keith.
Thank's for the info Dai and pleased to hear you have not relapsed. I also have been following the progress of Carfilzomib and at the last MM info-day I attended the consultants there were also very bullish about it's use.
The only problem I can see is the snails pace at which everything seems to go at once things reach our shores.
Your timescale seems a bit optimistic to me although I do hope you are right. I was reading an article in the Daily Mail one day this week which said that we as a health service were wasting money trialling drugs that had already been tried and tested in other countries and proved to work but because of silly protocol we have to go through it allover and causing unnecessary distress to the patient as well as racking up the cost.
Keith.
Thank's for the prompt reply Dai and very succinct as usual.
I'm taking 2mgx20 on days 1-4 the same 9-12 and 17-20 is that the same as yourself?
I don't have the Light Chain MM so it can't be traced in the urine and even the blood test is not so conclusive which means a BMB to be absolutely sure. I've also read on here that the Free Light Test is expensive to carry out so they try to avoid doing it unless it was important to do so (what's more important than a person's health?) but no stone should ever be left unturned in my opinion,disagreement in the medical profession is of much concern to me.
Have you relapsed Dai or was it a blip? I had my bloods checked yesterday prior to start of treatment although I don't yet have the results as yet…My results as at 07.06.12 are as follows Hb: (11.1) WBC (3.0) Plts (79) Neuts (1.4) and my Paraprotein levels 22.40gil.
Keith.
